Archives for November 2017

Second Annual National Microtia Awareness Day with the Ear Community Organization – November 9th, 2017

National Microtia Awareness ribbon for the Ear Community Organization – November 9th, 2017

On Thursday, November 9th, 2017, the Ear Community Organization celebrated it’s Second Annual National Microtia Awareness Day that took place throughout the United States.  Families from all over were excited to raise awareness and help educate about Microtia and Atresia at schools, parties, the work place, and more.  Many medical professionals from Microtia and Atresia repiar surgeons, to ENTs, to dentists, blogged about our special day on social media.  Some of the medical facilities who were a part of our awareness day were Johns Hopkins, ReconstratA, Vanderbilt University Medical Center, Children’s Hospital Seattle, the NIH, the University of Michigan, Children’s Hospital of Philadelphia, AudiologyOnline, HealthyHearing, SuccessForKidsWithHearingLoss, and many more.  Many hearing device companies and medical device companies such as Cochlear Americas, Med-EL, Medtronic, Oticon Medical, and Stryker CMF (the maker of Medpor) socially blogged about National Microtia Awareness Day, celebrating in their offices and educating employees more about hearing loss and Microtia.  In fact, many amazing moments took place on this special day for families and individuals with Microtia and Atresia everywhere!  Hundreds of children and adults, with their families, submitted pictures online in their National Microtia Awareness Day t-shirts and/or wearing blue and black, celebrating and helping promote awareness.  Many changed their online profile pictures to our Ear Community awareness ribbon.  Many also changed their Facebook profile pictures to the beautiful official Microtia Awareness profile frame/boarder on Facebook that one of Ear Community’s families created (thank you to the Mitchell Family)!  Our Microtia Awareness FB frame was used over 1,300 times!  Excitement about celebrations everywhere were blogged on Instagram, Twitter, and Facebook.  Not only did families celebrate in the US, but from many countries all over….Canada, the Philippines, Ecuador, Peru, Argentina, Mexico, Australia, Malaysia, Denmark, the UK, Poland, Ireland, China, Israel, Indonesia, New Zealand, and many others.   Many from families from other countries are calling November 9th, International Microtia Awareness Day!  So many children shared a newfound confidence where they got up in front of their classrooms and talked about their ears and their hearing loss (while wearing their Microtia Awareness Day t-shirts) and explained why having an awareness day was so important to them.  Children and their parents educated about Microtia and Atresia and brought in treats to their children’s schools such as blue awareness cupcakes and frosted cookies.  Even families with newborns affected by Microtia and Atresia found hope and a sense of belongingness with everything being so new to them.  There were also a series of group gatherings that took place with Microtia and Atresia families coming together to celebrate on our special day.

Raising awareness on NMAD at an elementary school in Colorado.

In a press release by, Melissa Tumblin, Founder of the Ear Community Organization, she explains that “Approximately one child in every 9,000 (in the United States) is born with Microtia (when the ear(s) do not fully develop during the 1st trimester of pregnancy).  Often affecting one ear or both ears, Microtia is diagnosed at birth, but there is no understanding as to why Microtia occurs. Facial challenges, hearing loss and the longing for social acceptance are some of the daily concerns for those who are born with Microtia.  “Children are born into this world not knowing they are any different from anyone else. Many with Microtia share similar stories of curious stares, bullying, or awkwardness.  Individual personalities, social conditioning, available treatments and bullying all impact how every child develops and copes as an adult.  By removing unnecessary boundaries and replacing them with resources, tools, and support, we can eliminate bullying and clear the way for an even more successful future.”

November 9th is dedicated to spreading hope and knowledge concerning a congenital birth defect, which derives its name from the Latin terms for little ears.  Mark the calendar for Microtia Awareness Day for November 9th and think of the number 9 as the shape of an ear.  In an interview with AudiologyOnline, Tumblin was asked “Why was it so important to have a national awareness day created?  Tumblin stated, “It is the intention of Microtia Awareness Day to help promote public awareness.  As the mother of a child who has microtia, and the founder of Ear Community, my hope is that families who have new babies born with microtia will leave the hospital armed with more answers than questions, and their dreams for their children intact.  I think that if more people learn about microtia and atresia, that they will be kinder and more accepting.  It is also my intention for anyone who is born without an ear(s) to realize that they are not alone.  Through this national day, they can find out about organizations and resources for information and support.”  Since 2010, the Ear Community Organization has brought over 7,500 people together from around the world at the organization’s events making it possible to share experiences and resources. The community is made up of not only children and adults with Microtia and their families, but teachers, advocates, and medical professionals from around the world who foster awareness and assistance for this amazing group of people. Board members for Ear Community either have the condition themselves or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives.

Here are some amazing memories from our 2nd Annual National Microtia Awareness Day!
See everyone next year!
Ear Community
www.EarCommunity.org

They say it takes a village…why giving the gift of hearing involves many hearts

Someone once asked Melissa Tumblin, Founder and Executive Director of Ear Community, how can I help you?  Melissa responded, “I would like to help children who are deaf and hard of hearing, hear better.”  Melissa explained how she and her husband, Brent, inquired about a hearing device for their own daughter when she was born, but they were told that their daughter was not a candidate for a Cochlear Implant.  Almost one year later, Melissa and Brent discovered a hearing device that could have helped their daughter hear better since birth, called a bone conduction hearing device.  By this time, Melissa began noticing delays in her daughter’s speech…her daughter didn’t seem to be as vocal as other children her age.  Also, Melissa discovered that insurance did not always cover the hearing device for children under the age of five or during the critical years of development (when speech and language skills develop).  This was very disappointing and to realize how many other children in our world either do not have insurance to cover a hearing device or are not able to obtain hearing devices right away, during the critical years of development, that could help them hear better and begin speaking clearly.

When Melissa and the Ear Community Organization were given the opportunity to help children hear better by donating hearing devices to those in need, this was just the beginning.  Now, the organization had to find audiologists who were willing to help program the hearing devices for families who applied through the organization.  These audiologists also had to have the programming technology and software to also make this possible.  Not all of the audiologists for these family applicants were familiar with the equipment or software they needed.  When Oticon Medical wanted to help Ear Community help children hear better all over the world, a friendship and partnership developed that would help these children hear, together, but things are never easy.  They say it takes a village sometimes when trying to help others.  This is most definitely true.  Most of the time, good deeds can not always be carried out by just one person.  The help of many others is often needed in order to make things happen.

When Ear Community donates hearing devices to those in need who live abroad, the organization could not do this alone without the help of the many good hearts at Oticon Medical.  These good harts are in customer service, sales and marketing, and audiology.   When a hearing device is donated, we all work together to make it happen.  Alan Raffauf, Tine Schou, and Beverly Ostrowski make sure that Ear Community’s recipients have everything they need from the hearing device to helping Ear Community find an Oticon Medical rep to work with in that country we are donating to.  Ear Community then makes sure the hearing devices make it safely to their destination.  However, along the way Oticon Medical audiologists like Tove Rosenbom and international sales reps like Izovelle Piedad, Martin Moeller, Claus Horneman, Patrick Tan, and Kaylini Naidoo help get the right equipment and software involved.  Many times, Izovelle, Martin, Claus, Patrick, and Kaylini make time to help out with these donated hearing devices, donating their time to make sure the fitting and programming happen correctly.  There have been times when Oticon Medical reps are challenged with travel trying to get these hearing devices to their destinations because of security issues at some of the country boarders.  Tove Rosenbom, one of Oticon Medical’s audiologists, has also been very kind to donate her time to  help program some of these devices to help prepare for some fittings in advance when extra help is needed.  Regardless, each time an Oticon Medical Ponto hearing device makes it to a child in another country, helping them hear better, it is the result of multiple hearts coming together to make it all possible.  This process can often take weeks to months to carry out from beginning to end.

Together, Ear Community and Oticon Medical have donated 33 newly donated hearing devices to children living in India, Sudan, the Philippines, South Africa, Russia, China, Malaysia, and Peru.  When a hearing device makes it to another country to help a child hear better, the passion behind the audiologists, the sales and marketing team, and customer service is there because the individuals behind this kind of help want to do this and truly want to help give children the chance to hear and live a better quality of life.  During this season of thanks, Ear Community thanks everyone at Oticon Medical who have helped us to help so many children thrive in life because they can now hear better.  If it weren’t for the passion in these professional’s hearts to want to take that extra step to help children hear better, these lucky children would not be living life they way they were meant to.  This wouldn’t be possible without your help and passion behind helping those who are in need of hearing devices.  Ear Community is thankful for you Oticon Medical!  A special thank you to Jes Olsen, President of Oticon Medical in Denmark, for employing such amazing employees who truly care about helping children hear better.  Thank you!

Melissa Tumblin
Founder – Executive Director
Ear Community
www.EarCommunity.org

Anonymous donor helps Ear Community raise awareness about Microtia and Atresia and kindness at Wonder movie prescreening

Tickets to our prescreening of the film Wonder on November 15th, 2017 for Ear Community.

On Wednesday, November 15th, 2017, at 6pm in Broomfield, Colorado, the Ear Community Organization was fortunate to bring families and their children together from a local elementary school to view the prescreening of the movie, “Wonder.”  Thanks to an anonymous donor, Ear Community was given the opportunity to buyout two theaters for families with children that have Microtia and Atresia or who are deaf or hard of hearing.  The Founder and Executive Director of Ear Community, Melissa Tumblin, discussed with families about choosing kindness and accepting differences.  Tumblin talked about Microtia (little or missing ears) and Atresia (hearing loss due to underdeveloped ear canals) and facial challenges.  Tumblin explained that “the next time you see a child or an adult in public who is missing one or both ears or who has facial challenges, to just consider saying “hi” and helping make their day rather than staring or questioning.  While it is always okay to have curiosity, it is also great to make these beautiful individuals also feel the same and accepted, not different…..to “choose kind.”

The funds from the anonymous donor helped buyout 200+ seats in two theaters at the Flatirons AMC Theater in Broomfield, Colorado, including providing a snack pack (popcorn, soda, and gummy treat) for each child and their families.  Ear Community requested that both films offer open captioning on the screens and made sure that the children and adults who needed assistive hearing technology had it available through the theater.  Ear Community was happy to raise awareness about Microtia and Atresia as the organization recently celebrated it’s second annual National Microtia Awareness Day on November 9th.  Tumblin said, that “We had a wonderful time and the movie was amazing!  Anyone will enjoy the film and to remember that kindness goes a long way, especially when it comes to children.”  Ear Community is an anti-bullying organization and prides itself on being able to bring children and adults together, who have Microtia and Atresia, along with their families, so they can be educated on their options and so they know that they are not alone.  Ear Community has been able to provide a close-knit community for Microtia and Atresia children and adults since 2011 through it’s seven online support groups and website.

Thank you again to our anonymous donor and for thinking of the families through Ear Community.  Words can not express the kindness that can sometimes come from the general public.  In this case, our donor helped bring children and adults together, along with school teachers, and helped educate and raise awareness.  Thank you so very much!  Last night was a memorable event for so many and all of the children enjoyed seeing the movie “Wonder.”  This opportunity for these families not only reminded everyone of what we all have going on in life, but this was also an amazing way to spread kindness and acceptance during this time of year and to remind us that while so many children and adults who have challenges in life, they really just want to be accepted and treated how you would like to be treated.  This anonymous donation to the organization was a true gift for so many.  Thank you and we will always remember “Wonder” and our special night.  Thank you to the families who joined us last night!

Ear Community, a 501c3 nonprofit organization, is one of the many nonprofits throughput the United States that was given the chance to participate through Lionsgate Productions in a theater buyout event to view “Wonder.”  We are so thankful!

Here are some amazing memories from our special event:

Ear Community
www.EarCommunity.org

Ear Community advocates at 1st Kids First Foundation meeting at Children’s Hospital of Philadelphia with the NIH

On Tuesday, November 14th, 2017, Ear Community was one of nearly 40 foundations and advocates from all over the country who joined together for the 1st Kids First Patient User Workshop meeting at the Children’s Hospital of Philadelphia, in collaboration with the National Institutes of Health.  Representatives from the attending nonprofits shared their thoughts and ideas on how the research community and advocates can collaboratively join together to help meet the needs of pediatric patients diagnosed with structural birth defects or cancer find the much sought after information they search for online or publicly when diagnosed.  Those who attended, contributed ideas and suggestions for the development of a new website and data portal, which will enable patients to collaborate with researchers to find cures for rare disease types, know if clinical trials are available and when, and find the latest information pertaining to a vast variety of causes.

Melissa Tumblin, Founder and Executive Director of Ear Community, was one of the many representatives who spent time with researchers in hopes of helping provide information in regards to the latest on Microtia and Atresia.  This flag ship program also hopes to create a sense of community where patients and researchers can go to find helpful resources, such as the many nonprofits like Ear Community, helping diagnosed individuals and their families, along with organizations connect.   In addition to the continuous efforts that Ear Community makes toward bringing awareness to the public about Microtia and Atresia, Ear Community looks forward to being one of the many reputable nonprofit organizations listed as a helpful public resource for families and researchers.  

Pictured below is a group picture of representatives from various nonprofits along with geneticists and some of the medical professionals from the NIH and CHOP who are trying to make a difference along with Ear Community through the Kids First Foundation.

Ear Community enjoys collaborating with the many organizations and medical professionals that we do in hopes of making things better for the families who have loved ones who have Microtia and Atresia.  We look forward to being a part of the Kids First Foundation program and we applaud the opportunity to work with the public and with medical professionals and researchers whenever given the chance to.  To learn more about the Gabriella Miller Kids First Pediatric Research Program through the NIH, please click here.

Thank you,
Melissa Tumblin
Founder and Executive Director
Ear Community
www.EarCommunity.org

 

National Microtia Awareness Day is November 9th!

National Microtia Awareness Day is just 1 week away, November 9th!

We look forward to helping raise awareness with so many of you all over the world, even though our awareness day is a National Day here in the United States. Everyone is welcome to join together just like so many did last year, everywhere.

Here are some ideas for helping raise awareness on National Microtia Awareness Day, November 9th, 2017:

1. Many parents, teachers, and children plan to help raise awareness at their schools. You can briefly talk about differences (including Microtia and Atresia), talk about hearing loss and hearing devices, and just spread kindness on this day. Everyone has something going on and it makes everyone happy to feel included, or to have someone just say “Hi” to you instead of staring or being mean in one manner or another. Be sure to include your school’s principal and staff on what you would like to do on our National Microtia Awareness Day so your efforts can be embraced fully.

2. Many plan to bring in treats for the class like awareness cup cakes, cookies, etc…

3. Many will be wearing our official National Microtia Awareness Day t-shirts, helping raise awareness on November 9th about Microtia and Atresia. Thank you to those of you who ordered our t-shirts last year and to those of you who ordered them this year!

4. On Facebook, many can participate in spreading awareness through social media by simply changing your profile picture to our awareness ribbon logo or your cover to our National Day logo. (see attached below). We also have a Microtia Awareness frame that you can all use through FB. Just search for Microtia Awareness in the frame search tab and it should come up. If not, I have posted about an easy way to create the frame on your own with the already created awareness overlay so you can place it over your favorite photo and have the same frame. (see previous posts on our page). We look forward to seeing so many pictures posted of all of you in your shirts or wearing blue with our blue ribbons so we can all enjoy seeing how special our day is and the impact it has on the public (world) for so many of us who have loved ones born with Microtia and Atresia. Let’s join together and make a difference with Ear Community!

5. Many plan to read a little from maybe the Wonder book (for the movie that will be releasing on November 17th), read from one of the Microtia and Atresia books that can be found on Ear Community’s website, or you can play this clip to the class or for little kids: https://www.youtube.com/watch?v=kUCWQB8Tii0&t=346s (the clip starts about 2 minutes in and only takes a few moments). You can even read from your favorite book about hearing loss or ask the teacher to read to the class and touch on accepting differences.

6. Here is a picture of a bunny born with only one ear so children realize that animals and people can be born without one or both ears. The kids can enjoy passing this picture around if they would like or just show it to them. (see attached). We have a veterinarian in our support group (here with me in Colorado near CSU in Forth Collins) who called me one day and told me that she knows what Microtia and Atresia is since she has had some animal patients affected by this, but she also let me know she had a daughter born with Microtia and Atresia and she knew exactly what her daughter had and loved finding our organization.

7. Many networks, organizations, and medical device companies will also be blogging about our National Microtia Awareness Day on social media in hopes of helping raise awareness about Microtia and Atresia, helping support our Ear Community Organization, and to help educate everyone about missing and underdeveloped ears, hearing loss, and facial challenges in hopes that everyone will learn a bit more and be kinder and just say “hi” in public.

8. There is also a large movement taking place during the month of November with the movie “Wonder” releasing on November 17th. I think many of us are excited to see “Wonder” and hope that it will touch the hearts of children and adults everywhere, helping promote kindness. Among other challenges that Auggie has in this movie, he also happens to have Microtia. Microtia is mentioned in the Wonder book and we are the proud organization to have established National Microtia Awareness Day for our children and adults to have and not feel alone. Please choose kindness. It makes everyone happier.

Thank you so much and we are so very excited!!!
Melissa Tumblin
and
our entire Board of Directors and support group admins for
Ear Community
www.EarCommunity.org

How Can I Support National Microtia Awareness Day on November 9?

AudiologyOnline:
Interview with Melissa Tumblin

November 1, 2017

Question

What is National Microtia Awareness Day?  How can audiologists support this initiative?

Answer

Melissa Tumblin: National Microtia Awareness Day is November 9th each year in the United States.  It started in 2016. The purpose of National Microtia Awareness Day to help promote public awareness of microtia and atresia.  As the mother of a child who has microtia, and the founder of Ear Community, my hope is that families who have new babies born with microtia will leave the hospital armed with more answers than questions, and their dreams for their children intact.  If more people learn about microtia and atresia, they will be kinder and more accepting.  It is also my goal for people with microtia to realize that they are not alone.  Through this national day, they can find out about organizations and resources for information and support.

To support National Microtia Awareness Day, audiologists can educate themselves on this topic.  Microtia and atresia are relatively rare, and audiologists may have learned in school may be outdated.  Get up to speed on the causes of microtia and atresia, treatments, and the psychosocial impact on patients and families.  Ear Community is a great place to start and there are many other helpful resources available. Companies who offer bone anchored solutions such as Oticon MedicalCochlearMedtronic and others, provide information on their websites and may also have online courses on AudiologyOnline.  Audiologists should educate their staff and referral sources about microtia and atresia.  Medical and health professionals can show their support to all of the individuals who are born with microtia and atresia by simply blogging about it or making a “we celebrate National Microtia and Atresia Awareness Day” post on their websites and in social media.  Lack of information is still a problem at many medical facilities when it comes to helping families and providing resources for children who are born with microtia and atresia. While National Microtia Awareness Day is recognized in the United States, Ear Community’s website is translatable in over fifty different languages, so everyone around the world can access the information, resources and support that is available.

Thank you for supporting National Microtia Awareness Day on November 9!

Thank you to Dr. Carolyn Smaka, Editor-in-Chief of AudologyOnline!
For more information about AudiologyOnline, please click here.


melissa tumblin

Melissa Tumblin

Founder and Executive Director of the Ear Community

Melissa Tumblin is mom to Alyssa “Ally” Tumblin, a child born with right sided Microtia and Aural Atresia.  She is the Founder and Executive Director of Ear Community, a nonprofit organization that promotes educational and public awareness about Microtia and Atresia and hearing loss, in an unbiased manner, while promoting advocacy and connecting individuals in the same situation. She is also the founder of the Microtia and Atresia Support Group on Facebook.  She is a past board member for the Hands & Voices Organization and a past council member for the Parent Advocacy Family Council for Children’s Hospital Colorado (Bill Daniels Center for Children’s Hearing).  She has spoken at microtia and atresia surgical conferences and has presented at past EAA (Educational Audiology Association) conferences and for AudiologyOnline.  Melissa has over 15 years experience in marketing medical device equipment.


Related Courses

Presented by Melissa Tumblin, sponsored by Oticon Medical, hosted by AudiologyOnline.

Microtia/Aural Atresia: A Parent’s Perspective
Click here.

“How to Overcome the Struggles of Pediatric Hearing Loss”
Click here.

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